Hi,

maybe a ‘bit off topic’ but what about the possible outcome of never achieving a SVR?

From what I have read, it appears that HCV’s symptoms, and I hope damage, is limited during treatment. For me I need 24 weeks and finish the first 12 weeks on my birthday! Feel better on DAA’s then before when not on them, but there is the chance of still no SVR.

Being the product of warehousing due to Interferon not working previously I have had to watch my liver being bounced around, a dismal pastime not enjoyed by myself or the medics that have helped me for that matter, over many years. The liver is now scarred and sported a 4.9cm tumour for a while as well.

If no SVR, my questions are:

1. say another tumour decides to keep company with my liver, is staying on DAA’s likely to be some part of palliative treatment?

2. if the liver stays okay but the bug is not eradicated fully with the likelihood of coming back in the millions post treatment, is staying on DAAs something that medically could be indicated? Maybe delay another HCC if one is on the cards?

3. if the DAA’s cannot always get into the upper reaches of my liver’s scar tissue and there then is a reliance on my immune system finishing of what’s left, does this put Interferon (just before and a bit after EOT) back on the table?

Yours

J.

P.S. didn’t mention the costs, but think of the windfall Gilead could make if people such as I were on DAA’s indefinitely; they would need to lower the cost though, but I don’t think their bean counters have enough sense to think that way and I think they would put gouging before profits just to be sociopaths.

Hi CJ and dointime,

I agree, if there is the slightest whiff of liver changes, yes talk with the patient about their history and maybe the need to test for Hep C.

I think now that it appears more curable this discussion will be easier for people who previously would have been well and truly frightened about the whole thing. If this does not happen, the whole affair resembles the third world shambles that it has already become for many.

The underlaying message from your sad news needs to be heard.

yours

J.

Hi m,

there is a lot of comment about inequity with availability of the meds which I fully agree with.

I would like to add though, another dimension from the perspective of my having been in a position to say in response to a doctor saying: “You need another 12 weeks meds on top of the 12 you are doing” – “okay”. I can afford it (generics).

This dimension is the issue of getting treated as some obligation not to get fully crook and really place a burden on the health care system.

Whether we are:

a) some rich bloke who can afford the $80,000 for the meds from Gilead,
b) some lucky joker who gets gifted the meds on a trial,
c) or like me who can afford the generics,

I think we (at least I) am obligated on my part to try to get better for my own sake, my family’s well being, and not to end up a basket case too soon and drain the health care budget.

I hope the government here in AUS sticks to its recent announcement of meeting its obligations to help people not in positions a, b, and c above meet theirs. Hope yours does too. From what I have seen on this forum, the effort people overseas seem to put into getting their health under control is commendable.

Yours

J

This issue and the attached article may need some ‘placing in context’, at least in my point of view.

I can relate to many feelings of fogginess and depression.

I was treated for many years for depression after a bad time with my previous field of work (child protection) many years ago in the mid late 1990’s. I happened to work in an area that is challenging and people being off on ‘stress leave’ was common. HCV or work – who is to know?

But since being infected, I have completed a second undergraduate degree, a Post Grad Certificate and Diploma, and in 2015 my Masters. I admit I found the later years hard going, but was it hard material, working at the time and eventually being crook with a HCC, age or simply HCV??

I remember HCV featuring in renewing my Pilot Licence medical years back (as well as the depression) and fair enough; there were a few incidents in the USA of people flying into buildings (well before 9/11). I guess I get a bit cautious with Hep C and the risk people may make assumptions about me, but well and good if these assumptions don’t affect me in anyway.

I think the main symptom of Hep C, in spite of claims it is the “unseen killer”, is the obvious fatigue we feel. For me, I am more sure then ever this is the case now I am being treated. Again, thanks for those with the foresight and actions to get us treated.

Yours

J.

My GP says I would need to worry if they were really dark, as in black.

your

J

Treatment naive?

how long into interferon and riba treatment is required to be not naive? I seem to remember they found out quickly interferon (alone) was not working for me.

how long ago would this be relevant?

the estimator programs that have been placed on this site usually seem to ask this, but my experience with interferon then interferon with riba was 15 odd years ago (and momentary at that).

fiddling with the latest program placed here (and thanks for that!) it seems to make little difference?? and the F score seems the most important, particularly from F3 to F4?

yours

J.

P.S. not sure this is all glossary stuff

Hi Bloot,

“I read about how peeps have suffered with the hep, but the meds have given them a new lease on life
This is pretty much the exact opposite to how I feel”.

I started treatment 25 years and two and a half weeks after I became infected. I think I get the gist of what you are saying.

Physically I have much improved since about 2 weeks into treatment; no side effects worth noting – physical that is.

How I feel though? Well:

a) happy about getting a potential get out of gaol card health wise; maybe even delay the next HCC?
b) perplexed as to how I can fill the days with new energy when before I was too tired to give a f….
c) scared that the promise of health may not work SVR wise and the process was like interferon and riba minus the side effects.
d) angry that I felt like I was an ignoramus and generally told to go away and cope/be healthy/loose weight/soldier on and the constant fatigue was something I could do something about. Refer point b. above, its the illness that causes the fatigue methinks.
e) never had a lot of people to share the emotional burden with – get sympathy, suggestions about diet, and quite frankly I don’t want feel I have to share everything about myself to feel good anyway. BUT reading this forum is sometimes painful, but more often good.

How do you manage all this after 25 years of having life dictated to you by some virus? I don’t know. This forum is good and it is great to see people doing what is needed to get better and SALVAGE what for many of us is the remaining part of our lives.

Don’t know how I am SUPPOSED to feel really; I might have to ask someone released from 25 years of prison for a crime they did not commit?

How I will manage if I get better – FIIK. In for another rolla-coaster ride – maybe? I have read a few of your posts and I expect you will work it out too. I know I have to. Again my gratitude to those who gave me the opportunity.

yours

J.